MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/27/2015 - 8:01pm
Replies by: Speedster

Hi everyone

I have been on Merck pd1clinical trial for over 3 yrs and I am a complete responder. I am going to discuss with my doctor on Tuesday, about stopping the drug & asking if I can stay on the Merck trial in a "Observation" status.

I have read post of other Merck trial participants being on observation and remaining a participant in the trial. Unfortunately, I do not remember the specifics what the protocol is. Does my doctor just notify Merck that I am a complete responder and want to remain on the trial in"observation status"? I realize that there are no guarantees if I were to recur that Merck would let me back on the trial.

I have a few questions: 1.)Once Merck agrees to put you on "observation" status, do you still have 2 more infusions before you stop the drug/trial? 2.)Do you still have to go in for regular scheduled blood work & doctor appts? 3.) Do you still have scans every 12 weeks. 4.) Is there any other protocol you have to follow to remain as an "Observation" trial participant.

Thanks for replying to my post. I would love to hear from others that are doing the Merck PD1 trial that have been allowed to remain on the trial with an "observation" status

Here is the trial I am on

https://clinicaltrials.gov/ct2/show/NCT01295827

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Dear MPIP Community Members:

Researchers at the University of North Carolina are working to develop programs to support families affected by a parent’s cancer. If you are the parent of one or more biological or adopted children under the age of 18 and have been diagnosed with advanced cancer, you are eligible. If you would like to participate, please use the following link to complete this ANONYMOUS survey:

http://go.unc.edu/ACAPUNC

The Principal Investigator for this study is Dr. Eliza Park of the University of North Carolina at Chapel Hill. Questions about the study can be directed to Dr. Park at Leeza_park@med.unc.edu or (919) 966-3494. The survey should take approximately 20 minutes.

Sincerely,

Shelby - MRF

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RJoeyB's picture
Replies 1
Last reply 4/27/2015 - 5:08pm
Replies by: tschmith

Hi all,

This is Joe, a.k.a. "RJoeyB", checking in after a long absence from the site, with a long overdue update on an overly eventful several months, most of which were spent in four different hospitals, nearly dying twice from two different rare complications of complications of treatment. I posted this over on the MIF forums and Brian P. had the good suggestion for me to repost over here on MPIP. I had heard from Catherine at MIF (thank you!) several weeks ago and Frank ("buffcody") a little further back and promised I'd write a more detailed update when I had some more energy about what's happened with me since just after Thanksgiving. Settle in for a long post, even by my standards. 
 
As you may recall, I had been dealing with a complication called radiation necrosis (or "RN") from the CyberKnife radiation treatment from the brain metastasis and first craniotomy I had a couple of years ago. The RN first manifested itself as a problem with my gait in my left foot last spring and progressively worsened through the summer and fall. Standard protocol is to treat the primary side-effect, cerebral edema or brain swelling, with steroids, typically Decadron (dexamethasone) and eventually the RN often resolves on its own. While it is difficult to tell RN apart from new melanoma itself with scans, mine followed the pattern of RN more closely according to all of my doctors. Through the time I was dealing with the RN, my left arm and hand also started to weaken from the neurological effects and I struggled with the severe side-effects of the steroids, especially fatigue, high blood sugar, and weight gain, but was able to manage through, although eventually required the use of a cane.
 
Unfortunately at Thanksgiving, I had a night where I had terrible pain and couldn't move my left leg or stand at all, so was taken by ambulance and admitted to my cancer hospital. After a few days, I improved some, but my doctors told us that the RN wasn't improving and the effects of the steroids were taking too severe of a toll on my body, so we jointly made the decision to have another brain surgery to remove the RN, which, by that time, had grown beyond the size of the original tumor. I was transferred to the parent hospital of the health system where my cancer center does its neurosurgeries and had surgery a few days later. Repeat craniotomies to the same area always carry additional risks — my neurosurgeon describes the first surgery as "doing snow angels on fresh powder," and the second, after the scar tissue from prior surgery and radiation as "snow angels on a plowed gravel parking lot." Also with RN, there's always a risk that they may find some new malignant cells too, but the surgery itself went well — they followed the same scalp and cranial incisions as the first time — and no melanoma cells were found in the pathology.
 
Although the surgery and immediate outcome went well, I soon developed a blood clot — a deep vein thrombosis ("DVT") in my calf that quickly moved to my lung as a pulmonary embolism ("PE") which can often result in sudden death. DVTs are about four times more common in cancer patients and in my case may have been a complication of the lack of mobility in my left leg. Normally they would treat clots with blood thinners, but since I'd just had the craniotomy, the risk for a brain bleed was too high, so an inferior vena cava ("IVC") filter was placed in the vein leading from my lower body to my heart to prevent further leg clots from moving up (I haven't had further clots, but need to be aware of the symptoms) and I was kept under close observation in the ICU until they were comfortable starting me on blood thinners several days later. The clots soon resolved and I moved to a highly-regarded rehabilitation hospital for physical and occupational therapy for my left side.
 
With intense inpatient therapy (3 hours a day), I made quick progress in rehab and was soon back to moving well with the assistance of the cane and had a discharge date before Christmas. But a few days before discharge I again experienced excruciating pain in both my left leg and abdomen. I was transported to the closest emergency room where they determined I was experiencing a "retroperitoneal hemorrhage", or bleeding into the back of my abdomen near my spine.
 
I was moved to the trauma center unit, one of the few in suburban Philadelphia (they were amazing), but despite attempts to find the source of the bleeding and stop it, my kidneys and lungs eventually began to shut down, so I was put on a ventilator and dialysis. I was in critical condition and we were told it was a dire situation and that we should have family start making their way to Philadelphia. In the minutes before I was intubated I had the most difficult conversations with my wife and daughters (17 and 21), ones I never expected to need to have at my age (44).
 
The source of the bleed was never found — it typically isn't — but the thinking is that spending time on heavy doses of powerful blood thinners made me more prone to bleeding, combined with the continued physical straining to walk and stand. I received 19 total units of blood transfusions to replace what I lost. After two rounds of dialysis, my kidneys began to recover and after four days on the ventilator, I was weaned off and again able to breathe on my own. The ventilator tube was removed and I was taken off of the heavy sedation on Christmas Day. My doctors told me they hadn't seen someone start talking so much or so clearly so soon after having a ventilator tube removed — I guess not unlike my writing ;-). 
 
Around New Year's, I was back to the rehabilitation hospital for more inpatient PT (for my leg and walking) and OT (for my hand and arm). The abdominal bleed left large hematomas pressing on the nerves between my spine and left leg — coincidence that it also affected my left leg as was the RN — leaving me with little to no movement in my leg. The largest of the hematomas was slightly smaller in shape and size as a standard ream of paper (10x7x3 inches) and is still being resorbed by my body — and still pushing on the large femoral nerve into my leg and pushing one of my kidneys out of position, although it still is working fine. My left arm and hand also worsened following the brain surgery and lack of use during the time I was hospitalized for the bleed, so I have limited use of my arm and fingers. My left foot also has a condition called "foot drop" that is actually a neurological result of the RN. I require a brace to control the foot drop and an additional effect called "clonus" that causes uncontrollable shaking when the foot is in certain positions. The brain incorrectly signals my calf to activate, causing the foot to droop and slightly invert, causing pain and the intermittent clonus. I made improvements over six weeks in inpatient rehab, going from not being able to sit at the edge of the bed without assistance and requiring 2 or 3 nurses and aides to get me from the bed to the wheelchair to being able to walk several laps on the floor with a cane, leg brace, and help of a therapist moving my left leg.
 
All in all, and what's most frustrating, is that the last year has not been new melanoma itself, but two different complications (the DVT/PE and hemorrhage) of a rare complication (RN) of a radiation treatment (CyberKnife) from the last new melanoma tumor I had over two years ago, the brain metastasis — my most recent full-body PET scan a few weeks ago again showed no new melanoma, although there is an area in my left shin that received prior radiation (three years ago) and surgery (last May) that lit brighter but should be treatable if needed (it could still just be post-surgical inflammation); my last brain MRI last week again was clean for any new melanoma and the surgical site looks very good for continued healing — my last one in January was clean except for remaining inflammation and edema that would be expected to show up post-craniotomy. The edema is now gone. My cancer doctors are actually quite pleased with my continued progress against melanoma itself. Through 14 tumors, 2 clinical trials, 8 surgeries (including 2 craniotomies), 6 rounds of radiation, 3 immunotherapies, and 2 rounds of chemotherapy (part of the TIL immunotherapy), this last set of complications ended up being the worst part of my nearly 5 year battle with melanoma. 
 
I now have "left hemiparesis" or partial paralysis of my left side. I've been home from inpatient rehab for a couple of months and, for now, I continue to use a wheelchair and we've had to make a number of modifications to our home — a stairlift, outdoor wheelchair ramps, a hospital bed in our dining room temporarily replacing our table, new "comfort height" commodes and safety rails in the bathrooms — along with a completely new living routine. I have had in-home PT and OT 2-3 times per week since getting home and am seeing some small improvements, being able to take a few steps with the cane and brace, and on carpet (which is more difficult than hard surfaces in the hospital), but not requiring the therapist to move my leg for me. This past Monday, I finally started outpatient PT and OT a few times per week back at the rehab hospital. There's only so much improvement I could make in the limited space of our home, with little equipment here vs. the outpatient gym, so we hope being in outpatient will bring further improvements. For now, our daily schedule and routine is very different and will be for the foreseeable future. It's a lot of work for my wife and she has been a real trooper at my side the whole way. 
 
No one can say for sure how much movement, strength, or sensation I'll get back — only time and hard work will tell. Inpatient rehab meant 3 hours of therapy every day, and although being home has been good, it slows the pace of improvements. It's been encouraging to see some new strength and movement in recent home sessions — I hope outpatient rehab will quicken the pace some, even though it's limited to 5-6 hours per week (vs. 15 as an inpatient). I've unfortunately had continued pain, sometimes excruciating, and fatigue since getting home, but am also seeing some small improvements. I had trouble sleeping for a while (an hour or two per night), too, but that is also improving some. Since I can't make the small adjustments and movements in position when sitting down or laying in bed that we all make, day and night, and take for granted, my left leg muscles tighten and hurt frequently. My wife needs to help me reposition my leg every few hours, day and night. It is slowly getting better, very slowly. It takes its toll on her rest as well.
 
There is a pain management and muscle spasticity specialist who we also now see at my cancer hospital — through most of my melanoma journey, I haven't had to deal with much pain until now. The steroids and other complications caused issues with my blood sugar, blood pressure, and blood oxygen levels, but we're working with my various doctors and the complications are mostly all now well managed and we're in the process of slowly weaning me from the countless medications and O2 machine. I've been sleeping upstairs again so hope to get rid of the hospital bed soon. It's all a slow process, but we're seeing progress. 
 
Since I was on Decadron for nearly eight months, my adrenal glands are no longer producing cortisol. I'm tapered off of the Decadron and now taking hydrocortisone (a biologically equivalent dose to the amount of cortisol produced by the adrenals). We're now starting to taper the hydrocortisone in an attempt to restart the adrenals to produce cortisol, but the taper process could take months. A week in, after dropping the dose by only about 15%, I've noticed a great increase in fatigue, even with the already significant amount of fatigue I already feel. 
 
In the five months before the initial gait symptoms of the RN, I managed to lose 45 pounds and was hoping to run in this year's MIF SFTS 5K. After prolonged Decadron use and the heavy fluid retention in the hospital, I then gained 55 pounds, but have since lost them over the past couple of months. But there won't be any running in my near future, if at all. Again, there is no way to determine yet how much of the brain and nerve damage is permanent. Hopefully the expected and renewed weight loss will help with blood pressure, blood sugar, and need for O2. 
 
The IVC filter may or may not come out. Typically they like to remove them after 3-4 months in a "younger" person (I don't feel that young) before they become permanently embedded in the vein, but with my history and current lack of leg mobility they could choose to leave it in; we'll decide with my doctors soon, but I won't be surprised either way. 
 
I've had a fall since I've been home, a few weeks ago. Middle of the night, I had to use the bathroom and as we were getting me back into bed, I made a misstep and went down, bumping my head on the side of my nightstand. We had to call 911 to help get me back up and also have paramedics check me. I didn't need to go to the ER because I wasn't having concussion symptoms, so my ego was more bruised than my head. Another reminder of vulnerability, though. I also had a near fall in the shower when my knee buckled as I stood to get up from the shower bench, but between my wife's strength and my own right leg, we managed to keep me from going down, but not without another bruise. 
 
I guess that brings you mostly up to date. I really appreciate everyone who's followed along and those of you who checked in with me — or tried to. There were times when I obviously couldn't respond and despite extended time recovering in the hospital and now at home, therapy and recovery has been exhausting. But again, please know your kind words, concern, and encouragement were all appreciated. I hope to be able to participate here more again moving forward. My family and I are very much looking forward to attending the MIF SFTS event this weekend, only a few miles from our home! Hope to see some of you there. 
 
All my best,
Joe
 
 

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StephyD83's picture
Replies 2
Last reply 4/27/2015 - 9:20pm
Replies by: liberty04281, Janner

Hi All-

Last week I had a Fine Needle Biopsy of lymph node in my neck that the Dr felt to be large & hard. He just emailed me & said the cells were indeterminate & they had to send it off for special staining to differentiate healthy from malignant cells. Does this mean my lymph nodes does have Melanoma in it?  Has anyone else had this on a FNA & if so what was your final result?

 

Thanks!
Staphanie

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rabbits68's picture
Replies 3
Last reply 4/27/2015 - 7:24pm
Replies by: newmanmark, rabbits68, Mat

I have been on Mekenist/Tafinlar combo for about 2 weeks and have been suprised (and thankful) that I do not have any side effects.  I was told the first 6-8 weeks would be rough until my body adjusted to it.  I ran a slight fever the first day, but since then I have felt good.  I have read some literature that says you won't feel side effects until a month. I am just curious if there is anyone who has had this same experience or is it too early to tell? Thanks,

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Jubes's picture
Replies 1
Last reply 4/27/2015 - 9:03am
Replies by: Ed Williams

Hi all. I have been on keytruda since September 2014  I recently posted about a problem I have had with cramps all over my torso. It is like frozen shoulder but from top of neck down to hips. It was agony and I couldn't move. I am in Europe and was worried I couldn't get home to Australia. My dr gave me the ok to take 25 mg prednisone and it is like a magic wand. Up to now I had been taking 900 mg ibuprofen every 6 hours and it didn't really help much. I know the prednisone counteracts the Pembro but at least I can get home now and I'm sure my doctor will have a plan :) he is amazing.  I just wanted to share this with you as this problem has been increasing over the last 10 weeks until it became unbearable. I could only find one other person on this site that has had the same side effect 

anne-Louise 

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buffcody's picture
Replies 1
Last reply 4/26/2015 - 1:17pm
Replies by: Anonymous

Catharine Poole who heads up the Melanoma International Forum just had published her latest book on melanoma.  It's up to date, which because of the greatly changing nature of the field is of great importance to us but hard to come by in readable and comprehensive form as this book provides.  The price is right from Amazon with an interesting Kindle offer right now.  (I don't have a Kindle so I can't try it.)  The easiest way is to just enter Catharine Poole in the search engine on the Amazon site (or Barnes and Noble) and Voila! you'll have it all. I'm a sometimes poster here and have profited a great deal from this forum and Catharine's

 

Frank

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/26/2015 - 5:20am
Replies by: Beezer, arthurjedi007

Hello Friends, My sister is two months out from her last WBRT for two large mets to the brain, she also has it in her lungs but the combo chemo drug she was on before WBRT was shrinking those, unfortunately the cough is now back again and we are worried, she had to be taken off the combo drugs before WBRT started, and to be honest the side effects from the radiation were worse than we thought, it has affected her walking and one hand is affected and also her congnitive is affected, she forgets things easy and she can  get very anxious, and aggressive even at times, she is on 2000mg of Keppra so thats not helping, she is starting ipi next Friday and we are delighted with that, but speaking to her today on the phone she is totally flattened, she has no energy at all and I'm worried she will not have the strenght to deal with this new drug. She is only 49 and she is my light in a storm, Im devasted I cannot be with her each day as she lives in Queensland and I live in Europe. She is the greatest little battle soldier you can find and has am amazing husband who cares for her day and night, but I'm so worried today as her strenght was not there and what if she cannot manage the ipi, What worries me about all this is the side effects of the radiation have worn her down we never expected this, will these side effects go away or are we hoping for to much.

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Anonymous's picture
Anonymous
Replies 0

Hello Friends, My sister is two months out from her last WBRT for two large mets to the brain, she also has it in her lungs but the combo chemo drug she was on before WBRT was shrinking those, unfortunately the cough is now back again and we are worried, she had to be taken off the combo drugs before WBRT started, and to be honest the side effects from the radiation were worse than we thought, it has affected her walking and one hand is affected and also her congnitive is affected, she forgets things easy and she can  get very anxious, and aggressive even at times, she is on 2000mg of Keppra so thats not helping, she is starting ipi next Friday and we are delighted with that, but speaking to her today on the phone she is totally flattened, she has no energy at all and I'm worried she will not have the strenght to deal with this new drug. She is only 49 and she is my light in a storm, Im devasted I cannot be with her each day as she lives in Queensland and I live in Europe. She is the greatest little battle soldier you can find and has am amazing husband who cares for her day and night, but I'm so worried today as her strenght was not there and what if she cannot manage the ipi, What worries me about all this is the side effects of the radiation have worn her down we never expected this, will these side effects go away or are we hoping for to much.

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yazziemac's picture
Replies 5
Last reply 4/26/2015 - 9:19am

Just got back from the cancer centre where Pete was fitted with a catheter that was necessitated by the fact that he can no longer urinate.  They believe it's due to the brain mets.  Just waiting for this liver inflammation to go down so that he can get back on the Ipi.  Homecare is coming tonight to show us how to manage the catheter at home.  Honestly, between his cane and now the catheter, my 56 years old husband is like an old man---breaks my heart.

 

Yasmin

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jessann's picture
Replies 3
Last reply 4/24/2015 - 5:46pm

Hi! New to the board and had a crazy ride so far. A mole I have had since birth, had a melanoma arise within it. Has anyone had this before? My first bioposy came back as: Clarks level III-IV with a lesion with app depth of 1.5mm, superficial spreading., but also said features that might suggest its arising from a congenital nevus, and should be considered approx. This triggered my surgeon to warrent a 2nd bioposy by someone that specialize more in melanoma. The 2nd report came back OPPOSITE! showing: Malignant Melanoma, superficial spreading, probable anatomic level 1 in-situ. WOW so now what do we do? I saw an oncologist who suggested I either do full surgery (SLNB and excision) or send it again to Dr. Mihms who deals with complex cases. I just got the new results today. It does explain it a bit more and I wonder if anyone has been in the same situtation? Malignant Melanoma, superficial spreaking, level IV, and a measured thickness of .55mm, arising with a compound congenital nevus with moderate atypia extending to within 1.5mm of the lateral margin. no ulceration, regression, or vascular invasion. Recommended a re-excision and the question of SNLB is left to the patient and physician. I haven't talked to the oncologist yet, no one calls back and I leave so many message (frustrating). And on another note I was scheduled for surgery today (because the oncologist said the 3rd results would be back mid week and as of last night at 5pm the nurses couldnt find them). So now my surgery will be this coming week and I am left to decide the best treatment. Any thoughts from the community? Also, with the full surgery, what is recovery like?

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flaglerjoe's picture
Replies 7
Last reply 4/24/2015 - 10:04am

Anyone else have the SLNB weeks after the WLE? They initially measured my melanoma as thin based on the punch biopsy, and after the WLE, pathology showed that it was actually a 2mm depth. Tomorrow I am going back from the SLNB that they did not do initially several weeks ago. 

 

I know this isn't ideal but I wondered if anyone else had theirs a while after the initial WLE?

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1derdog's picture
Replies 1
Last reply 4/24/2015 - 1:03pm
Replies by: arthurjedi007

I could really use some positive information on my husband's latest ct scan.  7 months ago my husband had a lesion in his right middle lobe which was removed successfully by VATS procedure.  They got it all & deemed him NED.  Now, in his latest CT scan they found a 2.9 cm lobular lesion just medial to the uncinate process of the pancreas invading the superior mesenteric vein.  He is being scheduled for a pet scan next week to determine if it is melanoma again.  His doctor doesn't think it is but obviously wants to eliminate the possibility.  Is anyone on this board familiar with something like this? The waiting is awful since we found out. We were so happy for the last seven months thinking that maybe this was the end of this roller coaster ride.  He had the mass in his lung for two years while on a clinical drug & it did not spread.  

Any words of comfort or information (good or bad) would be greatly appreciated.  

 

Thank you

 

wife (caregiver)

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tomw65's picture
Replies 1
Last reply 4/23/2015 - 5:02pm
Replies by: Mat

How long after the four ipi  infusions before testing to see if anything isworking or not

hazel43green

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yazziemac's picture
Replies 9
Last reply 4/25/2015 - 1:43pm

Hi

My husband, Pete, found out yesterday that one of his many brain mets is bleeding and his liver is very inflamed. He finished 5 days of whole brain radiation last week and was scheduled to have his 3rd Ippi infusion today.   He has to take a break from the Ippi and switch from Dexamethasone to Prednisone to try to address the liver and brain bleeding.  We'll be meeting with the oncologist weekly for blood work.  If he develops very bad headaches, we are to go to emerg.  I did a search on brain bleeds here on the forums and all the posts that I could find seemed to indicate that bleeding brain mets signalled "the end".  Is that the case?  No one has mentioned hospice to us at this point.  Pete isn't in pain, his only symptom is extreme fatigue and some unsteadiness with walking.  I would really appreciate your feedback.

Thanks,

Yasmin

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